Individuals Affected by Blood Cancer Feel Disease is 'Under Control'

A national survey demonstrated shared feelings across all blood cancer types about treatment options and their side effects, as well as other social, financial and emotional aspects.

BY Kristie L. Kahl

PUBLISHED July 11, 2018

Despite the many challenges that individuals diagnosed with cancer face, the majority of those with blood cancer feel that their condition is under control with current treatment plans, according to national survey results.

The survey – conducted by Health Union, LLC and titled “Blood Cancer In America 2018” – was created in support of the launch of Blood-Cancer.com, an online community designed to provide information and support to patients and caregivers impacted by all blood cancers, including myeloma, leukemia and lymphoma.

“We publish a variety of articles, discussion threads and different types of engagement options like polls, with the overall goal of ‘meeting people where they are,” Amrita Bhowmick, MBA, MPH, Health Union's chief community officer, said in an interview with CURE.

“When you really start digging in to the experiences (of patients and caregivers affected by blood cancer), there are far more that are shared,” she added. “We thought that it would be more effective to unite patients and caregivers in those experiences, versus keeping them separate.”

In total, 2,596 individuals were surveyed – including 1,976 patients and 620 caregivers – from Nov. 10, 2017 to March 2, 2018. Topics in the survey included standard health care and research, as well as aspects of the social, financial and emotional impact from a blood cancer diagnosis, Bhowmick said.

“Ultimately, we say the goal is to ask respondents the types of questions they would wish more people had asked … we tend to get data that not everyone else is really getting to because they may not be asking those questions, even though (these topics) are really important to patients and caregivers,” she added.

Of all the blood cancers, individuals with lymphoma – such as mantle cell, diffuse large B-cell, follicular lymphoma and more – held the most positive views of their treatment plans, with 69 percent of respondents saying their symptoms were under control, followed by 60 percent of those with leukemia and 56 percent with multiple myeloma.

Of note, Bhowmick found it interesting that so many reported positive feelings toward their treatment, given that only 1 in 5 respondents went online to look up their results, “even though they said they were very comfortable talking to their doctor and spoke to the fact that learning from other patients or just looking things on your own always had a role,” she added.

When these results were broken down in to subgroups, three-quarters of patients with acute myeloid leukemia reported to be even more positive about their conditions being under control; however, those with less common blood cancers like myelodysplastic syndromes were less likely to feel this way.

Despite a positive outlook on treatment, survey responders still reported feeling frustrations with their care, such as lack of conversations pertaining to available treatment options and potential side effects.

As a result of this finding, patients noted that treatment effectiveness (64 percent) and potential side effects (38 percent) influenced their decisions. Meanwhile, cost was only cited by 17 percent of patients in terms of driving their treatment decision-making.

“However, more than half actually noted that cost of care had a significant impact on household finances,” Bhowmick said. “Despite this, less than a quarter actually utilized financial support programs that might be available. So, we don’t know why that is happening, but anecdotally we definitely heard that patients are not necessarily aware that financial assistance programs might exist. There might be a missed opportunity there.”

Three-fifths of respondents use more than two types of treatment, with chemotherapy as the most common reported by the patients (69 percent) and caregivers (80 percent). By cancer type, steroid therapy and stem cell transplant were most commonly reported by those with multiple myeloma; steroids and radiation therapy for lymphoma; transfusion therapy and steroids for leukemia; and individuals with less common blood cancers were most often treated with transfusion and watchful waiting.

When asked about side effects, three-quarters of patients experienced fatigue. Other side effects included osteoporosis, experienced by 63 percent of patients with multiple myeloma and 46 percent of those with lymphoma, and heart problems, which were experienced by 55 percent of individuals with lymphoma and half of those with leukemia.

“There were a lot (of side effects), which was not surprising given the number of treatments and courses that people might be experiencing,” Bhowmich said. “Some were acute in nature and others were more chronic and long-lasting, and there was some commentary, which was worth noting, around the fact that the extent and duration of side effects, including many that will never go away, are not discussed as much as some patients would like.”

Overall, the most noteworthy aspect of all the findings were the similar responses among all blood cancer types. “One thing that really jumped out was just the idea that the survey data really validated the concept that people with different types of blood cancer really do have more shared experiences than not,” Bhowmick said.

“The shared experiences from patients with other subtypes of blood cancer can really be providing valuable information, connections and validation that patients and their care partners ultimately need,” she added. “With this, the hope is that they will feel more informed and feel like they are making better health decisions, or at last feel like they have better control and feel more comfortable managing their condition.”